We arrive early for our doctor’s appointment. We wait patiently. We sit across from the doctor, and we nod and smile politely during our visit. We pick up the prescription for our meds and then we walk out the door to make room for the next patient waiting.

And sometimes we do this even when the discussion about our health care leaves us with unspoken concerns or unanswered questions. Most patients know what this feels like, so it’s reassuring to learn that academics are actually studying it: our fear of being labelled a “difficult patient”.

Research published in the journal Health Affairs summed this up nicely in their study abstract:(1)

“Relatively little is known about why some patients are reluctant to engage in a collaborative discussion with physicians about their choices in health care.

“We studied participants living near San Francisco who voiced a strong desire to engage in shared decision-making about treatment options with their physicians. However, several obstacles inhibit those discussions, including:

even relatively affluent and well-educated patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations

physicians can be authoritarian

the fear of being categorized as ‘difficult’ prevents patients from participating more fully in their own health care.

Keep in mind that the patients recruited for this study were from Palo Alto Medical Foundation physician practices, described by the researchers as “wealthy, highly educated people from a desirable suburb in California, generally thought to be in a position of considerable social privilege and therefore more likely than others to be able to assert themselves.” As residents of Silicon Valley, they also represented one of the most wired health populations on the planet. Most participants in this study were over 50, lived in affluent areas and had either attended or completed graduate school.

Yet here’s how researchers described the realities of patients like this:

“Most participants in the study talked about how they actively tried to avoid challenging their physicians during office visits.

“Deference to authority instead of genuine partnership appeared to be the participants’ mode of working.”

I’ve been to Palo Alto when I attended Stanford University’s Medicine X conference in 2012, my heart sisters, and I have to say that if these “wealthy, highly educated people” feel compelled to resort to this deference to authority, do the rest of us dull-witted patients have a hope in hell of not doing so, too?

As Dr. Dominick Frosch, lead author of the Health Affairs report, told The New York Times:

“Many physicians say they are already doing shared decision-making, but patients still aren’t perceiving the relationship as a partnership. People experience a different sense of self in the doctor-patient interaction. The clinical context creates a reluctance to be more assertive.”

“And it’s hard to think that people from more disadvantaged backgrounds would find it any easier to question doctors.”

We are right to worry about appearing difficult to our doctors.

Some studies, including one by Dr. Perry An reported in the Archives of Internal Medicine, have revealed that one of every six outpatient visits is described as “difficult” by physicians.(2)

Difficult encounters are more likely to occur with patients who:

have a mental disorder

present with more than five somatic symptoms

exhibit high use of health services

possess a list of complaints

have threatening and abrasive personalities

Some doctors studied reported, in fact, that they secretly hope that their challenging patients will not return, and considered these difficult encounters to be “time-consuming as well as both personally and professionally unsatisfying.”

Dr. J.E. Groves, in a telling study he called “Taking Care of the Hateful Patient” published in the New England Journal of Medicine back in 1978, described four basic types of difficult (er, “hateful“) patients (3):

1. the demander 2. the manipulator 3. the denier 4. the self-destroyer

Does it sound disrespectful (and perhaps naïve) for doctors to label a patient as difficult? Make no mistake – there are indeed those people for whom “difficult” would be a charitably descriptive statement of fact; we’ve all met these types in our travels.

But my concern is for those of us who are generally reasonable and curious and not-difficult, the people who simply want to question our doctors (but may hesitate) or to request specific treatment options (but may hesitate) or to be taken seriously when we are feeling ill and desperate (but may lose hope of doing so) because of our own reluctance to be unfairly labelled.

Over the past seven years, I’ve heard from many heart attack survivors who have shared with me horror stories of being treated as “difficult” patients because they challenged a doctor’s dismissal of their cardiac symptoms when they knew that something felt very, very wrong to them.

I was one of them. In 2008, I asked the E.R. doctor (who had just misdiagnosed my textbook heart attack symptoms as acid reflux) about this alarming pain radiating down my left arm. And this is how I was later warned by his E.R. nurse in no uncertain terms (and no, I am not making this up):

“You’ll have to stop questioning the doctor. He’s a very good doctor, and he does not like to be questioned.”

Her stern warning to me immediately left no doubt whatsoever in my mind that I was, in fact, being perceived as a “difficult” patient because I had the temerity to ask questions – yes, even in mid-heart attack.

By then, having been quite confidently misdiagnosed a few minutes earlier by a person with the letters M.D. after his name, I was already feeling embarrassed for having made such a fuss over nothing, and for wasting his very valuable time in Emergency while all those truly sick people were lined up in the waiting room.

Nobody had to tell me twice to shut up and go home quietly. Like a nice, well-behaved patient.

According to Dr. Stephen Balt, Editor-In-Chief of The Carlat Psychiatry Report:

“Doctors are people too, and it would be even more naïve to think that doctors don’t have their own reactions to (and opinions of) the patients they treat. Let’s face it: doctors simply don’t like dealing with some patients.

“But I would posit that there’s no such thing as a difficult patient. To be sure, some patients present with difficult problems, challenging histories, poor interpersonal skills, and needs that simply can’t be met with the interventions available to the physician.

“But every patient suffers in his or her own way. Doctors bring their own baggage to the interaction, too, in the form of strong opinions, personal biases, lack of knowledge, or – conversely – the perception that we know what’s going on, when in reality we do not.”

Patients like me can be frustrating to physicians. Doctors may not be able to solve a diagnostic mystery or find a treatment option that works for this type of patient, and they may dread encountering these patients again due to that frustration.

Patients like me also walk a razor-sharp tightrope. We risk being labelled as “difficult” if we persist, yet we risk being dead if we don’t. And we are justifiably afraid of being sent away in case something is actually very wrong.

“When patients are branded as difficult or demanding by health care professionals, it can in turn have a detrimental effect on the treatment a patient receives.”

No wonder many of us resort to “deference to authority” like those nice, well-behaved Palo Alto patients like to do.

And no wonder the Palo Alto study author Dr. Frosch made this plea in The New York Times:

“We urgently need support of shared decision-making that is more than just rhetoric. It may take a little longer to talk through decisions and disagreements, but if we empower patients to make informed choices, we will all do much better in the long run.”

.

UPDATE March 7, 2016:In a new study published in the British Medical Journal (BMJ), researchers reported that disruptive behaviours displayed by patients considered “difficult” compared to non-disruptive “neutral” patients induce doctors to make more diagnostic errors than with neutral patients. (4)

21 Responses to “When you fear being labelled a “difficult” patient”

Very interesting article. I have danced with anxiety and depression for 37 years and take daily meds.

My chest pain was dismissed as ‘probably anxiety’ when I knew it was not!

One week later I had a widowmaker heart attack and an emergency stent. When I continued to have chest pain for 5 months after the stenting, I was dismissed and told again that I was just probably still anxious about my HA. The only person who was listening was my psychiatrist! She told me that my chest pain was not part of my usual pattern of symptoms and that she would refer me to a major heart center, but feared her referral would be ‘tainted’ coming from a psychiatrist.

She told me that no doctor should ever tell me how I should feel… he/she needs to listen to the patient. She urged me to demand a cardio referral from my GP to either Stanford or Texas Heart. My GP was in agreement with my psychiatrist and not with the cardiologists. I went to Stanford and was diagnosed with endothelial dysfunction in my main coronary arteries…a very painful condition that causes chest pain, fatigue and shortness of breath.

Thanks for this, Stephanie – what a stroke of brilliant luck that your psychiatrist went to bat for you, and that your GP agreed with her. That psychiatrist was 100% correct in insisting that “no doctor should ever tell you how you should feel… he/she needs to listen to the patient.”

This feels so true to me. I started with my first cardiologist after a misdiagnosed MI. I told her that I function best with lots of information. Her response was that I wouldn’t need to see her after this visit (back to primary care who misdiagnosed me), that I didn’t need cardiac rehab.

After the heart attack, I developed coronary artery spasms and I ended up in the hospital and urgent care multiple times in 3 months. The last cardiologist I saw said that unless I had a return of the actual MI symptoms (and those only) that he didn’t need to see me. I interpreted this conversation as, “I have done all I can for you so please don’t keep coming back.”

I have switched insurance in order to get access to other physicians. I am lucky to be a state employee in this regard. Others have to stick with who they have. I hope I will be able to have a better experience with a new doctor.

I have struggled with the feeling that I am making too much out of my continued symptoms. I believe the initial misdiagnosis was precisely because my PCP thought I was an “anxious female.” How do I present my concerns without being labeled as a difficult, anxious patient? It is a conundrum.

Thank you for your postings. I only found your blog a few months ago, so reading your “oldies but goodies” has been great. I feel like I am truly hearing from a “heart sister” as you talk about your experiences, so like mine.

Hi Taryn – first of all, thanks for your kind words about this site. Glad you found me! Second, I’m so glad you have the ability to switch insurance and I wish you better luck with your future physicians. I’m not a physician, but even I know that one of the biggest risk factors for having a cardiac event is having already had one, and symptoms during a second or third subsequent cardiac event are not necessarily exactly the same as during the first MI – so I’m not even sure what your doctor meant. Any patient already diagnosed with a heart attack/vasospasms deserves more careful monitoring in the future, not dismissal. You are not making “too much” out of continuing symptoms. Good luck to you…

Carolyn — I have been very curious about this message I have received from the cardiologist and the cardiac rehab folks about the kind of chest pain that “means” something.

I have had 2 doctors, and 2 rehab people tell me that once you’ve had a heart attack, if you have another one, it will present with the same sensations. Have you ever heard about this? They have been very sure about it, so I have learned to say that I am having chest pain but not THAT chest pain.

Hi again – although a second (or third) heart attack does often present with symptoms similar to the first cardiac event, several credible sources report that this is not always the case, depending on the location and severity of a coronary artery blockage the second (or third) time around.

Patients themselves often report experiencing completely different symptoms during subsequent cardiac events. For example, after a first heart attack described as “severe pain in both arms and two elephants perched atop a broomstick pressing into my chest”, Paul Imhoff told WebMDabout his second heart attack: “But this time it was different. The pain was mild. I was simply short of breath and sweating.”

Meanwhile, I’ve personally met a number of women whose symptoms during second (and third) cardiac events were so different from their first experience that they refused to seek emergency help at the time, mistakenly convinced that this couldn’t possibly be “real” because the symptoms didn’t feel the same, causing dangerous and potentially deadly treatment-seeking delay (and “different” in some cases ranged from just a persistent cough to just numbness in the lips!) These women could have died if they’d waited around until experiencing precisely the same symptoms they’d felt the first time.

In 1993 I had my first angiogram via ER while visiting my daughter in Chicago. Sent home to follow up with annual stress tests. My doctor at home quickly dismissed me saying “women don’t have heart attacks”.

Thankfully things have changed in regard to women and said daughter is now a Pediatric Nurse Practioner.

I am finding the care I receive from Nurse Practioners to be exceptional. They listen, give me time and so far have not sent me on my way with “there, there dear……you’ll be just fine”.

Currently, my cardiac NP is sending me to a university hospital and clinic for a second opinion. She can tell by looking at me something is wrong. Despite all tests, labs, etc being “good”.

She wants to help me live life. The cardiologist is always ready to step in for confirmation or contribution. I have tried over the years to change my mindset. The doctor is not paying me to sit in his waiting room just to interrupt his day. I am paying him for his services, and I have a right to expect and receive quality care, and respect. Given a choice, I would prefer to spend my time with friends and family, maybe a walk in the park. PS…….I am never at my best when I am ill.

Thanks for sharing your perspective, Elma. You bring up such an important point: we’re not at our best when feeling ill. We can appear to be challenging even without ever meaning to. Feeling scared, exhausted or in pain can change our personality in even the most normally cheerful and well-behaved person.

You are very lucky to have such a great cardiac NP! Best of luck to you…

I had a heart attack in 2013 at the age of 58. It was created by the perfect storm of a dose of Adderall, a cup of coffee and allowing my heart rate to go too high in a spin cycle class.

I didn’t know what was wrong but I felt a pop, immediate exhaustion, weak arms and dizziness so I stopped and got off the bike. After 20-30 minutes, I really didn’t feel better so I called my husband and drove home. I wanted to go to the ER since I had never experienced those feelings before so my husband drove me, though I was feeling back to normal within an hour. Four hours and one blood test later, it was determined I had indeed had a heart attack and was hospitalized. Since my arteries were completely clear, they thought it was either a spontaneous coronary artery dissection or a possible blood clot. I did take a blood thinner for 3 months while the artery healed.

But the cardiologist tried to convince me to continue, as well as take 5 heart medicines for life. However, I did not have high blood pressure but borderline on the low end. My weight and BMI was normal. My cholesterol was normal, etc. so I questioned him why I needed to take these meds?

He said they had proven benefits. I mostly saw the side effects so instead, I gathered information, used whole foods, took supplements like red yeast rice, spirulina, chorella, plant sterols and a baby aspirin a day.

When I called to make my scheduled check up appointment, I was told it would not be necessary. I had been dropped. Though I did not want to take medications, I feel it a disservice not to follow up to make sure my heart is doing well.

Yikes. A good example of how a “difficult” patient can expect to be fired if “non-compliant“ with doctor’s orders. Ironically, the growing trend in modern medicine is actually shared decision-making (as opposed to meekly following orders) in which both physician and patient can discuss treatment choices together. I too have often wondered why so many of my readers are routinely put on meds to reduce blood pressure following a cardiac event even with existing low/normal BP – often stopping these meds only when dizziness or fainting becomes problematic. This shouldn’t be one-size-fits-all medicine, yet apparently often is…

Yes Carolyn…it seemed to be his way or the highway. And, I actually went through two different cardiologists because I had even less communication with the first one assigned to me. I chose the second one and thought I had an open dialog of understanding until I called to get my next check up. The nurse was rigid and rude and said I no longer needed to be seen!?!

Was I non-compliant so I should be completely ignored? How about monitor me and see how I am doing? Isn’t that a better way? Luckily, so far so good. I find it interesting that many a doctor just want to prescribe meds. Why not take the time to see if lifestyle, diet or exercise could accomplish the same or better results, instead of putting a bandaid on the condition? Some patients want a pill and but some do not nor are they even needed!

I would have been having a vasovagal episode if given blood pressure meds since mine is 90/60 in the evenings. I made that mistake by taking a sleep aid with the side effect of possible lowering of blood pressure and ended up in the ER with profuse cold sweats, nausea and nearly passed out. I learned my lesson to check out each and every supplement after that.

“Why not take the time to see if lifestyle, diet or exercise could accomplish the same or better results, instead of putting a bandaid on the condition?” That’s exactly the question studied since 2004 by cardiac researcher Dr. Rainer Hambrecht, who found that 90% of heart patients who rode bikes regularly had significantly better cardiac outcomes for years after they started their exercise regimen compared to heart patients who had not been prescribed regular exercise. But patients have to be equally committed – some seem to prefer to take pills rather than embracing lifestyle, diet or exercise changes.

Thank you for listening, Carolyn! I discovered this site after my heart attack and have been a follower ever since. You are a lifesaver of valuable information for us. We need to be the champion of our own health, listen to intuition and not be intimidated or made to feel less than by anyone. We are not crazy but concerned about our well being…our lives depend on it!

Patients are not difficult. Doctors are useless, less intelligent and do not understand patients problems. They prescribe medicine based on sellers data. In Jammu, India, very few doctors own a computer. They have a share in money collected from angiographies, stents, bypass and so on whether necessary or not. Patients lose patience and these fellows call them difficult persons. I am such a difficult person at age 85, and have proved many doctors in India wrong. Ask the doctor why a patient appears to be difficult. He must be a third rate doctor.

My friend searches for his first private doctor after his USAF career, finds one, has an initial appointment, afterwards has many questions which he submits in writing and asks for a followup appointment.

Doctor’s staff informs him by telephone that the doctor will not be able to take him as a patient after all. Since this is his first experience with a non-military doctor, he is puzzled until another friend tells him that his list of questions earned him the label of a “difficult patient” who would consume a great deal of the doctor’s time. (After his Air Force career he remains a very fit person with no serious health issues of any sort.)

♥ For women living with heart disease, from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women's health advocate, heart attack survivor, blogger, author, speaker here on the west coast of Canada

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